Really fed up!!!

Molly1

Hi. I've only posted on the 'hello' forum before now, but have been told this is the forum most people look at. I've finally managed to see my consultant today and he's told me that it's now fairly certain that I've got rhuematoid arthritis. (Before now he's only called it sero-negative) I still haven't got RF showing up in my blood and my inflamatory markers are not really high, but he says that this is because I've only got it (so far) in my small joints, hands and feet. He says that RA often starts off grumbling like this before becoming worse. As you can imagine I feel pretty fed up and worried about the future. My consultant has doubled my hydroxychloroquine dose and started me on diclofenac twice a day. Apparently, as I've been on hydroxychloroquine for 9 weeks he wonders if the original dose is going to have any effect, hence the doubling of tablets. Has anyone been on these medications? Any ideas how to keep on playing my guitar? I'm wearing arthritic gloves I've got from Amazon and they seem to help the aching when I'm playing. I think I'd be devastated if I had to give up playing with my local church music group.
Thanks for listening Molly x

hileena111

Hi Molly
Welcome to the forum.....I am not going to be much help to you because I have OA not RA but just to say welcome and people will be along soon to answer your queries

Love
Hileena

stickywicket

Hi Molly1 and welcome.

I think the medications thing is all a bit hit and miss at first until they find what really does it for you. We’re all different and what works for one doesn’t necessarily do it for another. Diclofenac was very good to me for years (Mine’s RA too) but I can’t take anti-inflammatories now so I’m on Hydroxychloroquine and Methotrexate. All of these meds can take a few weeks to kick in so try not to worry if the higher dose and the new Diclofenac don’t work immediately.

As for the guitar…that’s a tricky one. Using the affected joints is good. Repetitive actions, not too good. You might try not to do too much on it until you’re really stabilised with the meds. A physio might be able to give you some exercises that would help.

I hope the meds start working soon.

barbara12

Hi Molly
And a very warm welcome from me, I have OA so cant help much, but I do wish you well with everything.
I do understand your worry, hopefully when they get your meds sorted things will become clearer to you.
I do hope you stay with us, it is priceless having people to talk to that know some of what you are going through.
Take care

dreamdaisy

Welcome Molly, it's nice to meet you but I am afraid I cannot help too much as I am getting ready to go away for a few days and during the course of cooking I have manged to get fresh chilli in all kindsa places. :shock: I had a struggle to be diagnosed, I had five years with no meds and the GP telling me it would all go away (at that stage it was just one fat knee), then I began some medication in January 2002. Since then I have tried all sorts of meds, and the docs eventually settled on a diagnosis of PA (psoriatic arthritis) in October 06 - mainly because I had a rare bout of psoriasis! PA is a sero-negative too, and I have developed OA (but I am a deal further down the road than you.) I hope you find the forum helpful, informative and supportive - I cannot believe the difference it has made to my life. I wish you well. DD

prefabkid47

Hi Molly
I have RA in both hands,mainly in the thumb and knuckle joints and have had it for several years.Have been on methotrexate for this time which has given excellent control and additionally take diclofenac when I get flare ups,but fortunately these don't occur very often.
Which medication works best varies from individual to individual,this your rheumatologist will no doubt find which is best for you.
Ron

chile168

Hi Molly and like everyone else, I also wanted to extend my warm welcome to the forum.

Sorry to hear of your diagnosis and understand your worries which are very natural and I am sure everyone would agree.

I was originally diagnosed with Lupus then Fibromyalgia and in 2009 with RA. I have learned to cope with them all but in reading your post, reminded me of how I cried and cried before I was diagnosed with SLE. My daughters were young at the time and I thought of the worst. 6 years later, I am still here fighting I have been on hydroxychloroquine but couldn't get on with it. Have also taken others but to be fair I am rather naughty in taking them so I now only have Depomedrone injection and pain killers daily. Get told off every time by rheumi as my illnesses are not under control as I refuse certain medicines.

I agree with what has been said by other members, medicine works different from individual to individual but so do the illnesses and how they progress. I have RA all over but my feet are most affected. I also agree that repetitive work with hands is not good. When I do repetitive actions, my hands go into spams and lock which is painful so I have learned to give myself a rest.... a lot of rest lol.

I am sure that as you get to know everyone here, you will find them friendly, good listeners, give great tips and are great fun.

Good luck with your medicine and hope they relieve some of your pain.

Eve xxxxxxxx

Molly1

Thanks everyone for your comments. It's really good to know people understand what you feel like. I'll try this new medication and see what happens - I appreciate it will work differently for individual people. I think the worst thing about hearing you've got RA is fearing the worst. You read about how it can affect different parts of the body, heart etc as well as joints, Hopefully this doesn't happen with everyone who's got it?

Take care and thanks again
M xx

stickywicket

Try not to think about the 'worst', Molly1. Keep your strength for dealing with what you've got. Don't waste it wondering what you might get. I've had RA for 50 years & I've had a great life.

Molly1

Thanks stickywicket. You're quite right of course! The panic and feeling sorry for myself has subsided today & I feel more determined to accept RA & work with it. My Oldest son is moving to the States to get married in a couple of weeks and I think everything just got on top om me. M xxx

chile168

Hi again Molly, hope you are having a better day.

I understand 10000000 percent. That was exactly my worry before being told I had Lupus as it can also attack your organ and because of what I had read on the net, I did nothing but cry for weeks. So as you can imagine to then be told I also have RA is worrying. I think the net can be very informative, however, it can also frighten the life out of you hun because what affects one person, does not mean it will affect you.

I know is easier said than done, but try to remain positive, try to remember that doctors will monitor you and will find the right medicines. Many of us still remain active, agreed not as active as before understandably but you learn to adapt and learn to have new interests.

I try not to worry too much, I prefer to think positive and keep telling myself that I will cross that bridge, IF and WHEN it comes. In the meantime, I try and take each days as it comes and enjoy it.

Love from Eve xxxxx

mig

Hello Molly,Welcome to the forum,i joined a few weeks ago ,encouragement i have got from other members help to calm you down and help with stress which can make matters worse.Iwas diagnosed last september and am still going thru trial and error to find right meds for me.
Have you checked out the chit chat page,its good for a giggle about anything but arthur.
Are you going to the states for the wedding?my eldest son and his family lived there for 4 years we had some fantastic holidays.thinking of you Mig

stickywicket

I do understand where you're coming from Molly1. I find I cope well most of the time then the straw that breaks the camel's back comes along and I can just feel swamped for a while. That's where this forum comes into its own as people can really relate to how you feel.

Having a son in the USA can be good. I've got one there and we have great holidays - free board, travel when it's cheapest etc. Of course I'd love to see more of him but while we're there we're with him 24/7 (apart from when he's at work) so that's really lovely.

I'm glad you're feeling a bit better today. I hope it continues.

Molly1

Thanks for the encouragement Eve, Mig & stickywicket. I agree that the internet often tells you things that you don't need to know. You immediately think you're going to have all the worst symptoms listed!! America will be great for holidays. My son's going to live in San Antonio Texas. Lovely and hot down there for most of the year. I know that once he's left then the rest of the family will be able to adjust and we're going out there in August for his wedding, which will be great. I'm probably more worried about him because he has Aspergers (autism) and for a long time I thought he'd spend his life in his bedroom and he needed me to do any social things for him for many years. He met his fiancee on the web 5 yrs ago (She has Asperger traits as well) and so I guess you can imagine I have quite a lot of worries about how he's going to cope and find a job out there. RA was definately the final straw!! M xxxx

chile168

Hi Molly just read your reply to posts.

As a mother I admire you because is hard to let our children cos they are always our children, go and move on. Obviously your son having autism must be so worrying for you by him moving to another country but what struck me in when is when you said that for a long time you thought he would spend his life in his bedroom. How wonderful that he has found someone who he is compatible with and how wonderful a mother must you be to just let him be even if he is in a country. Wow I so admire you, wish I had your courage, I panic when mine go on holiday and eldest daughter lives round the corner lol. You are a very strong lady. Have a wonderful time in America. My congratulations to your son .

Love from Eve xxxxxx

traluvie

Hi Molly,

Welcome from me too..
My story is very similar to yours.. My bloods were ok no rf factor and inflammation levels ok, my xrays were ok too, but my rheumy said my symptoms were that of Rheumatoid arthritis(but this was not confirmed with bloods) he done a bone scan which showed i had inflammatory arthritis in elbows,hands,feet wrists and OA in knees..I too started on double dose of hydroxy for first month then to 200mg a day am about 4/5 months of taking it.. i didn't notice any difference till about 12 wks, i now take diclofenac,depo mendrone injection, tramadol and others lol.. I have ok days and bad days.. you learn to listen to your body..Never give up hope.. i am sure with the right meds you can continue playing the guitar.. We are all here to support you, your not alone..